Greetings! 

April 7th to 13th marks National Volunteer Week across Canada, where we take the time to recognize and appreciate the invaluable contributions that volunteers make to society. As Canadians, we sometimes take for granted the universal health care, education systems, and other resources or amenities we have available to us. We also sometimes forget that it is volunteers who play a key role in ensuring our health and well being. 

There’s no better example of the impact of volunteerism than the progress that’s been made in the fight against cystic fibrosis. Volunteers first started Cystic Fibrosis Canada, and they have built it into what it is today. From the Board of Directors, to the chapter members, to those who assist with the execution of a variety of different events, including the Walk to Make Cystic Fibrosis History, volunteers are the heart of this organization. We cannot thank our volunteers and CF community members enough for all they do! 

As we head into the busiest time of year for Cystic Fibrosis Canada, volunteers are busily working in the background on events including the Walk, the Decant Gala, golf tournaments, and many third party fundraisers. We also have an amazing team of advocacy volunteers who are working hard and making progress to ensure that people with CF and other rare diseases have access to medications that will save lives and increase their quality of life. CF community volunteers are also working to help other families, whether it be coping with a CF diagnosis, or facing the challenges along the journey of life with CF. 

The Ontario staff team is proud to work in tandem with all our volunteers to END CF! 

These past few months have been a time of change for our organization as we streamline and focus our staff resources to be the most efficient and effective we can be across the entire organization. Thank you for your continued support and unwavering dedication to the cause. 

Best regards,

Jeff Beach

Chief Executive Director – Ontario 

Pre-transplant, life was not difficult, but it did pose a lot of challenges in which I had to reroute any plans and activities I had made. It is important to understand that I never let CF and my damaged lungs get in the way of what I wanted to do and accomplish. I am a very social individual, ironically being social was hard on my body. I couldn’t sustain a long conversation without losing breath and developing a strong coughing fit. I didn’t let that stop me from talking my tongue off from time to time. I couldn’t go on prolonged walks without packing a few water bottles in case I had a coughing fit, in which water helped subside the intensity of the coughing. Waking up in the mornings was the worst. As stated, I would be greeted with an intense coughing fit. Then I would continue with the daily morning routine consisting of 1 ½ hours of inhaled treatments, and then breakfast. All of this had to be done before school at 8:45 AM. Climbing stairs was my biggest nightmare. It used to be my mission impossible. I felt like dying after climbing a flight of stairs. My life was fairly rough, but I was able to push on, do a full year of college, and hold a job for a year, until I wasn’t capable of doing so. 

As predicted, as time went on my disease progressed more and more until I was almost completely immobilized. The beginning of my very last admission to St. Michael's Hospital, I had arrived by ambulance. For the first time I felt the need to call the ambulance because I was too sick to bring myself to the hospital. This admission was the worst, and at times it felt like the ending was near, which technically it was. My body was not absorbing any of the IV antibiotics, nor any of the inhalation medications I was on. At one point I was on 30 litres of oxygen while resting, and even more when mobile. Everything was going downhill so fast, I wasn’t even able to do PFTs testing because my lungs were that deteriorated. One day, while my mother was visiting me a doctor came into my room, pulled a chair close to my bed and sat down. He asked me if I knew how sick I really was. He asked me this question three times, each time his voice got shakier. I cut him off after the third time to tell him I'll sign the papers to get a transplant. He jumped up with joy and continued to tell the rest of my healthcare team. Ironically, my body started to respond to the medications after I signed the papers, but I knew that if I didn’t go through with this surgery my next sickness could very well be my death sentence. So, from the time I signed the papers and did my pre-transplant testing, it took little less than a month for me to get the call that my new lungs were ready. Finally, my family and I got a well-deserved break.

Living with CF is a constant battle with yourself, and your body. To others looking in from the outside, people with CF look healthy, maybe a bit skinny with a slight cold, but nonetheless, still look healthy. That’s how we want to live our lives, “healthy”. From birth we are determined to live a normal life. As normal as our peers who don’t have any progressive diseases. We want to be “normal” to whatever extent that means.

CF is a part of me,

but CF isn’t who I am. 

By: Kadeem Morgan

Hamilton was originally nicknamed the “Ambitious City”, and the Hamilton Chapter lives up to that name. One of the original chapters of CF Canada, it has gone through a variety of transitions and changes, like many chapters.  Founding CF Canada members, Donna and Doug Summerhayes are from Brantford, one of the cities that make up the Hamilton Chapter. The Hamilton Chapter, begins in Burlington, and includes, Stoney Creek, Simcoe, Brantford, Port Dover, Haldimand Norfolk, Binbrook, Hamilton and other towns/cities that border those mentioned.

Hamilton has two CF clinics, McMaster Children’s Hospital and Hamilton Health Corp. The amazing team of healthcare professionals provide outstanding care and support for children and adults living with CF.

The tremendous support of Kin can be felt throughout the various regions of the Hamilton Chapter. They are always there to support the Walk and other chapter events. The Kin also host many events in support of CF. Friday the 13 ^th in Port Dover is one of the most notable, which is supported by many Kin clubs.

The Hamilton Chapter was recognized with a National Volunteer Award in 2017. They were awarded Chapter of the year - an honour so well deserved!

The ambitious efforts of this dedicated team of volunteers have resulted in growth and benchmark achievements. Since 2014, when the Hamilton Walk changed locations to Bayfront Park, it has raised over one million dollars. It attracts over 800 participants, and is a highly anticipated community event.

In 2017, volunteers took on the task of hosting a Princess Ball. The committee comprised of 22 volunteers, which include parents of children with CF along with community minded individuals, have successfully raised over $130 000, in just 3 years. The Princess Ball in Hamilton has become one of the most sought after events, selling out in less than 2 hours. In addition to raising valuable funds, the event has raised awareness about CF. Each year a video is created, highlighting children living with CF throughout the Hamilton area.

McMaster University, located in Hamilton has been involved with Shinerama since it began in 1964 raising over $1.57 million throughout the years.

Lawn Summer Nights is relatively new to the Hamilton Chapter. Simcoe has hosted 2 successful LSN, and Brantford will be hosting their inaugural LSN this summer.

Hamilton can boast of a variety of community events, including the Ultimate Frisbee Challenge, Dungeons and Dragons, Quinn’s Clan Dance, golf tournaments, carwashes, Hamilton Bulldogs 50/50, bake sales and musical events, to name a few.

Corporations and groups such as Carstar, Skal International, Jordan Engineering, and many community businesses have been tremendous supporters.

Cystic Fibrosis Canada would like to recognize Regional Advocate and CF mother Sasha Haughian, for her extraordinary dedication and commitment to advocacy. Over the past few months Sasha alongside her husband Jamie, has enhanced advocacy efforts in Ontario by meeting with multiple members of provincial parliament (MPP) on both the oppositional and governing side of the House. Sasha, like many other advocates across the province, has been meeting with elected officials advocating for improved access to CF medicines. Not only has she been spreading awareness and building strong relationships with elected officials, but she has also mobilized and encouraged others to attend meetings with their local MPPs.

“Sasha has been a huge support and asset to the effort. She has been willing and available any time I have asked for advice or suggestions, and has always taken the time to read, review, and answer any questions that she has been presented with. In addition, her personal blog in which she documents her family's journey with CF has been a wonderful resource and reassurance to me as a new CF parent. Having people like her available (and so passionate about helping others) through the support network has made the transition into the CF life a little more bearable, and I can't thank her and others like her enough for that.”

– Danielle Weil, Ontario Regional Advocate

“Sasha and Jamie have been relentless in their efforts to advocate for better medicine in the CF community. I have enjoyed spending time with them discussing life and have appreciated how hard they are working to arrange meetings with MPP's across Ontario.”

– Rob Burtch, Ontario Provincial Advocate

Sasha’s leadership is truly inspirational as she continues to collaborate with elected officials, combining efforts with other advocacy volunteers and staff from Cystic Fibrosis Canada. We hope that Sasha’s accomplishments will encourage you to get involved in the National Advocacy Program and help fight for change in improving the quality of life for those living with CF and their loved ones. 

This month, we spoke with Allison Sadowski from our Ottawa office about her experience with Cystic Fibrosis Canada and her views on the amazing progressions being made within the CF community.

Kin Krowd - Stayner CF Information Night

Looking to get more involved with Cystic Fibrosis Canada?

Is there a chapter, volunteer, event or initiative that you would like to see featured in a future newsletter?

Please contact Bryn Turner at bturner@cysticfibrosis.ca.